Reshaping Lives: Device helps heal babies heads

Laurie Robinett noticed a flatness to her son’s head as soon as he was born.

She thinks her son Jackson might have stayed in the same position in the womb much of the time.

“He was a matter of weeks old, and we were already giving him tummy time and doing anything and everything to try to reform the head,” said Robinett, of Woodstock.

Nothing seemed to work.

So the family eventually ended up in Patrick Flanagan’s office.

Flanagan, an orthotist at Mercy Woodstock Medical Center, fitted Jackson with a sort of helmet designed to treat head shape abnormalities.

Jackson began wearing the helmet, called a Star Cranial Remolding Orthosis, at 9 months old. After about four months, his head had been reshaped.

Now 3 years old, Jackson has little memory of the experience.

“I play football?” he asked his mother as he picked up the helmet the other day.

“I don’t think it’s going to fit you anymore,” she responded with a laugh.

The Robinetts are among a growing number of families turning to the treatment.

“Flatheadedness,” or positional plagiocephaly as it’s described by doctors, can be an unintended consequence of a campaign that began in 1992. At that time, the American Academy of Pediatrics urged parents to lay newborns on their backs to prevent sudden infant death syndrome.

And shortly after that, pediatricians were urged to take a closer look at the shape of children’s heads.

Dr. Patrick Phelan, a pediatrician with Mercy Woodstock Medical Center who referred the Robinetts to Flanagan, said up to one out of every 10 of his patients now have head shape abnormalities.
The parents are encouraged to increase the child’s tummy time, or time spent lying on the stomach playing, he said. Some of the children with tight neck muscles take part in physical therapy, he said.

Depending on the severity of the deformity and the effectiveness of the treatment, many of the children also are referred to an orthotist.

If the deformity is severe enough, it can affect a child’s jaw, causing problems, such as TMJ, temporomandibular joint disorders, or basically, pain in the jaw.

But few studies have been done to determine the physical impact of a head shape abnormality.

For instance, if a child’s eyes become asymmetric, with one farther forward than the other, that potentially could affect depth perception, Phelan said.

“But in terms of it affecting the brain or anything like that, that’s not going to be too scary of an issue,” he said.

So the decision to move ahead is usually based on aesthetics.

“It’s fairly cosmetic,” Phelan said. “In some of these kids, you look at their face and you can see this kid doesn’t look right. Another kid, you don’t notice anything until you turn to the back of their head.”

He usually suggests the parents at least speak with Flanagan and learn more about the treatment, but also to be realistic.

“Just because you wear that, you’re not going to come out looking like George Clooney,” he said.

The treatment is mild as the helmets provide a “gentle pressure,” he said.

“It’s less force than someone’s going to have with braces,” he said.

Between the ages of 4 and 9 months, when the head grows quickest, is the ideal time to wear the helmet, said Flanagan, who sees a couple patients a week. He usually likes to catch children before age 1, but helmets have been prescribed up to 18 months.

“What the helmet really does is direct the growth of the skull,” said Flanagan, who uses helmets provided by STARband Kids.

The helmet, treatment and appointment average between $3,000 and $4,000 with insurance typically covering the cost, Flanagan said.

“Most patients only proceed if there is insurance coverage,” he said.

They can be worn for up to a year, but most children wear them three to four months, Flanagan said.

Patients start out wearing them in hour intervals until they’re wearing them 23 hours a day, only taking them off to bathe.

Because the children are so young, they tend to get used to them.

“Honestly, it was harder for me than it was for him,” Robinett remembered.

Still, she said she worried from the beginning.

“There were tears, more or less vanity. ‘Oh my gosh, people are going to see him. They’re going to wonder what’s wrong with him,’ ” she said.

Because of this and the many questions parents often field, Flanagan gives them cards to hand out that explain the use of the helmets.

Robinett said she eventually adjusted.

“It just became part of our everyday life,” she said.

Robinett just had her second child, Ella.

“As soon as she came out of the womb, I’m like, ‘Check the head,’” she said. Ella’s head is fine.